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    awok677's Avatar
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    Me, My Father and The Alzheimer's

    Primal Fuel
    I figured the best way to track and share the results of my nutritional adventures with my father and his Alzheimer's was to create a journal here. My plan is to update this once a week even if nothing is happening. Please feel free to use this as a venue for anything you want to ask or say about Alzheimer's. This is very much an n=1 with my father's quality of life as top priority.

    My father is 93 years old. He was diagnosed with Alzheimer's by the local memory clinic in Jan 2011 at 90. I took him to see his GP a few months earlier when we'd been talking about my brother and he had no idea who we meant. I've been the one to take him to all of his appointments etc since the beginning, though I've only taken 24/7 responsibility since Dec 2011 when my mother died (brain haemorrhage).

    Up until 2008, when he was 88, my father was fit and healthy and really the poster boy for a fulfilling retirement. He tried scuba for the first time at 75, achieved his glider pilot's silver C at 80 and was teaching himself German and Astronomy through his 80s. He had a pacemaker fitted at 84 because his heart rate dropped dangerously low. He noticed because he couldn't quite manage his usual set of push-ups in the morning! Since then his heart health has been fine and he continued to maintain the garden and do all the cooking as well as most of the shopping.

    In 1988 he suffered a detached retina while driving – fortunately in this country – and that was the end of my parents' twice-yearly jaunts across Europe with their caravan. It was also, imo, the start of things going downhill. My mother took over the driving and by necessity the shopping and there were several attempts to fix the retina but his vision has remained very bad in that eye. He did eventually try driving again, but his confidence was shot and he didn't stick with it.

    Until my mother died, they managed okay between them, but my father was incapable of managing on his own, so I moved in to look after him and over the following 12 months, he gradually deteriorated. I was concentrated on giving him the best quality of life I could for what appeared to be his last few years and was resigned to the expected progression of the disease. He responded well to the medication - Exelon/rivastigmine - (he had forgotten how to write his signature, but with the medication, it came back) but the deterioration continued.

    So, in October 2012 I started to concentrate on my own health and to focus on dropping the excess weight I'd accumulated in feeding him the foods he enjoyed and could eat with his few non-opposed molars. It means he finds chewing difficult as he uses his incisors to chomp and so meat often ends up a tangled mass of fibres that he can't swallow. I was feeding him toast and sandwiches and lots of biscuits as he'd been quite frail when I moved in. To boost my own motivation I bought myself some of the latest low carb books, as I have been low carbing off and on since reading Atkins 10 years ago. The books included Wheat Belly by William Davis and I read about the problems wheat can cause with digestion and how B12 deficiency can mimic or may even be a factor in Alzheimer's. Volek and Phinney said the same thing in the Art and Science of Low Carbohydrate Living. Huh.

    My parents have always been very much meat and veg people. They didn't do sauces and my father grew a lot of his own fruit and veg, so I grew up on belly pork and home-made shepherds pie, lancashire hotpot, roast joints followed by bubble and squeak, all cooked by my father. For 8 years it was most often my job to go and fetch the milk from the farm down the road. If I got there early in the milking it was still warm. My father's preference for breakfast was the broth he kept on the go from all the left-overs and cooking juices, usually with a slice of brown bread cubed and added to the bowl. Dessert was rare but there was always ice cream in the freezer for hot days, though biscuits were occasional, crisps a very rare treat and never kept in the house, and sweets had to be bought from pocket money. If we were hungry between meals there was bread and always cheese in the fridge and my father made his own clotted cream from the top of the raw milk. I'm only now aware of how close to primal my parents lived, mostly because whole foods bought in bulk or grown were cheaper than processed 'treats'. Before I was born, in a previous house, they had also had their own hens.

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    When my father was about 70, his hip became painful enough that he couldn't walk far on it. The surgeon he saw looked at the x-ray and said it wasn't too bad and he should come back when he couldn't walk at all. This was not acceptable to my father whose favourite activity was walking – preferably up mountains – so he went away to do his own reading and ended up cutting white flour and dairy out of his diet. He started drinking tea without milk and baking his own wholemeal bread, fruit cakes and oat-based biscuits. His hip got better. About 5 years later it was bad enough that he could only walk 100 yds without sitting. He went back to the surgeon who looked at the new x-ray and couldn't believe he was still walking on it.

    So when I read Wheat Belly I was already aware that my father had reduced his wheat intake once before for his health. I was also aware that over the last few years my mother's preference had dominated the shopping and his intake of bread and biscuits had increased. I figured since he'd already done the same previously, I would not be imposing unduly on him to remove wheat (in fact all grains) from his diet to see if it made a difference. By this point, what my father ate was what I put in front of him. If I offered something he might say no thank you, but he'd never ask for anything I didn't offer. So in December 2012 we cut out wheat. (Actually for a few weeks I still bought weekly fish and chips and skinned the batter off the fish.)

    My father's ability to interact had deteriorated. He couldn't follow a pointing hand but would stare at me or my hand. If I commented on something I saw, he would just answer in response to whatever he'd been thinking about. I'd say while driving – I see the roads are still wet, and he'd say – no, as if agreeing with me. About a week after we cut out the wheat we were out in the car and I said, without pointing, something about all the water in the fields, which were on my side of the road. No, he said and then he stopped, looked across me at the water and said – oh yes, there is a lot. Big, big turnaround from my perspective.

    My brother and his wife visited at Christmas and saw the turnaround. He'd looked after my father for the day in October and in December he spent some one-on-one time with him and then told us he'd had a conversation of 3 or 4 connected sentences with him that he couldn't have done in October. My brother went away with his nose buried in his own copy of Wheat Belly (I've given away 4 or 5 copies since) and a list of other books including Gary Taubes' The Diet Delusion (Good Calories, Bad Calories).

    The improvements continue to be small and mostly subjective. Because every day is much like the next, it's hard for me to pin down specific improvements, though I journal every day and note any significant changes. One set of his friends, when I explained the changes, effectively dismissed them as – oh yes, some days he'll be better than others. They are completely invested in CW and have no interest in the science behind it. Another, who also spends time with my father saw a difference in how much more aware he was of others and the world around him, but in all cases I've explained in advance my own perceptions. We don't have enough regular interaction with others for anyone to really notice this level of change on their own, so observations are biased by my own interference.

    When we started on wheat-free (not just bread, etc, but anything with wheat products as an ingredient) I also started him on a multi-B vitamin. After reading more specifically about B12 and its effects (Could it be B12? By Nancy Pacholok) I changed that to a high dose (5000mcg) B12 supplement. I also added D3 and a supplement of phosphatidylserine which has some anecdotal success. In February I cut out dairy for myself (no more acne!!) and stopped cooking with butter, changing to lard and dripping as much as possible.

    At Easter (March 2013), my brother and his wife stayed while I had a few days away, but they couldn't confirm any further improvement though he certainly hadn't deteriorated any more in the 3 months since Christmas. At his stage of Alzheimer's (he needs help with dressing and sometimes with toiletting, has no idea who I am or how old he is and has symptoms of stages 5 and 6 of the 7 stages) that's a win.

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    awok677's Avatar
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    Since Christmas, my brother and sister-in-law have been reading the same books and finding much of the same evidence that I have, though I'm also coming from a history of personal low carbing. At Easter they convinced me to try coconut oil (turns out my jar was off – who knew?) and at the same time I'd caught up on Vit K2. So for the last 3 weeks or so, I've switched to cooking with coconut oil exclusively and added a high dose multi-K supplement for both of us.

    When the original diagnosis was made, it was explained to him, but he never really got it and the word 'Alzheimer's' appeared to be unintelligible to him. We've mostly just told him it's his age and that he has a bad memory and he's been happy enough with that and forgotten it 5 mins later. Just over a week ago, I was cornered and told that he wanted to see someone who could explain to him what was wrong and why. I told him that would have to be me and we sat down and I explained that he had something wrong with his brain called Alzheimer's disease. He responded that we'd have to see someone who knew about it. I explained that we had already seen a specialist and he had some medicine which had helped to slow it down but that there was no cure for it and they had done all they could. Of course he recalls none of this and it's hard for him to accept that it has happened.

    This is the conversation I never wanted to have with my father. How do you tell someone – even a 93 yr old – that their days are effectively numbered? So I went on to say that my brother and I (though he still doesn't really believe that he has children, possibly because we are adult) had found out about people who had got better from the disease and so we were doing what they had done – hence all the tablets I feed him. (Oh yes, a few times between Christmas and Easter he'd asked what the tablets were for – never an issue before.) But that even the people who got better had taken 2 or 3 years to do so, so it was a slow process, but we were doing what we could and it was working because he is better now than he was before Christmas. - Am I? Yes.

    That conversation took 10 or 15 minutes and he seemed to be following what I said. It's far more awareness of his condition than he's ever shown since I've been here, but it's still all circumstantial and transitory. I suspect it's the effect of the K2 and possibly the coconut oil.

    As far as his general diet goes, he's mostly primal, and lower carb than he was, but not what I'd call low carb or fully primal. He starts the day with melon slices, followed by bacon and eggs. After breakfast he settles down to watch aeroplane dvds (and mostly sleep) and after both breakfast and dinner he has chocolate. This is because when I moved in he needed feeding up and chocolate has always been a treat. It replaced the biscuits when I took out the wheat. It's a mixture of milk and plain and some with fillings (though no wheat) but I've been trying to lean more towards dark chocolate recently as I'm aware of the recent work on connections between insulin resistance and Alzhiemer's. Through the day I give him apple and cheese as snacks and a banana for lunch rather than a cooked meal. I've also experimented with banana and egg pancakes folded over clotted cream which he seems to enjoy.

    Dinner is mince (beef or lamb) with onions and mushrooms (fried), or smoked sausage (nitrates but no wheat filling) or smoked mackerel or salmon fillets, sautéed potatoes, fried egg and either peas, baked beans or whatever veg I'm having (carrots, broccoli). And sunday is roast chicken with roast spuds, roast onions and 2 veg.

    What to do next.

    I've been tracking my own calories and macro- proportions for a few weeks now. I should sit down and figure out his and see just what his intake is.

    I wonder about increasing his K2 supplement. Currently K1 1000mcg, K2 mk4 1000mcg, K2 mk7 200mcg. It's implicated in myelin sheath repair which is significant for nerve cells in the brain. He's on 5000mcg D3 as well.

    I suspect I should reduce his chocolate intake, perhaps even try stopping it for a week or two to see if it has an effect. Need to find something to replace it with as a snack after breakfast and dinner – either fruit or consider making cocoa and coconut oil bites. Hmmm.

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    So in the last week I've tried 2 things. One is that I've doubled my father's vitamin K dose and the other is trying coconut oil as a direct supplement.

    Since doubling the vitamin K 6 days ago, I've had 2 further fairly in-depth conversations about what's wrong with him and he's asked questions about what I've told him. This is definitely an improvement since Easter - even if it's tiring for me! It's still subjective, but it's something I can point to him not having done before.

    The coconut oil is interesting. I started using it really as the best (read healthiest) choice for cooking for us both, He didn't seem to notice the taste so I use it on everything, including roasting chicken. But dropping in on the Alzheimer's Society forums, I found a running thread on using coconut oil as a supplement. Apparently the MCT provides a quick source of ketones for the brain and some people are seeing definite improvements for the space of a few hours until the dose 'wears off'. This makes sense if it is providing an alternate fuel source for a glucose metabolism that's been compromised by insulin resistance.

    So I have tried a teaspoonful of coconut oil. He didn't spit it out or pull faces, but it clearly wasn't that enjoyable, so it's not something I would insist he takes. Given that the suggested dose was tablespoons rather than teaspoons! I didn't notice any particular change or improvement in his cognitive ability as a result, but he's getting probably the equivalent of 4 or 5 teaspoons a day in the cooking, so I'm not too bothered. I've been looking at food choices and supplements that will stop or slow the damage occurring in his brain and at foods and supplements that can boost repairs. I'm convinced that the improvements we've seen so far have been a result of both reducing damage (cutting out wheat and reducing carbs) and boosting repair systems (vitamins and supplements).

    I'm encouraged by these recent developments although his increasing awareness of what is wrong with him is harder on both of us. In a way it's easier to believe in the permanance of improvements that take time to develop.

    For myself, I'm coming off a month-long weght loss plateau in which I've started documenting what I'm eating and my weight seems to be moving again. I'm willing to accept that high levels of stress and disturbed sleeping interrupted my previously steady progress. Because of being 24/7 here for my father, I'm limited in my exercise options. I really need to work on bodyweight exercises, but as long as my weight is still dropping I'm happy enough for the moment. Being too active around the house tends to disturb my father. As long as I'm not rushing around making noise, he's happy to sit quietly. So exercise has to take a back seat to diet for the moment.
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    Dulcimina's Avatar
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    Quote Originally Posted by awok677 View Post

    The coconut oil is interesting. I started using it really as the best (read healthiest) choice for cooking for us both, He didn't seem to notice the taste so I use it on everything, including roasting chicken. But dropping in on the Alzheimer's Society forums, I found a running thread on using coconut oil as a supplement. Apparently the MCT provides a quick source of ketones for the brain and some people are seeing definite improvements for the space of a few hours until the dose 'wears off'. This makes sense if it is providing an alternate fuel source for a glucose metabolism that's been compromised by insulin resistance.

    So I have tried a teaspoonful of coconut oil. He didn't spit it out or pull faces, but it clearly wasn't that enjoyable, so it's not something I would insist he takes. Given that the suggested dose was tablespoons rather than teaspoons! I didn't notice any particular change or improvement in his cognitive ability as a result, but he's getting probably the equivalent of 4 or 5 teaspoons a day in the cooking, so I'm not too bothered.
    There was a doctor, Mary Newport is her name I believe, who was adding it to her husband's oatmeal and saw improvements in his lucidity. In addition to the incidental coconut oil that comes with his roasted chicken, could you add some in other foods?

    What about adding a little to mashed potatoes or green smoothies? I make several cauliflower dishes. I add coconut oil to cauliflower rice and mashed cauliflower. I use coconut milk in cauliflower porridge (it's basically a sweet version of the preceding two dishes). A lot of people on here drink bulletproof coffee. I drink bulletproof tea. I start with teabags that have chai spices, add butter, MCT oil and a little stevia, and whizz it with a doohickey from Ikea to make it foamy.

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    Quote Originally Posted by Dulcimina View Post
    There was a doctor, Mary Newport is her name I believe, who was adding it to her husband's oatmeal and saw improvements in his lucidity. In addition to the incidental coconut oil that comes with his roasted chicken, could you add some in other foods?
    Hi Dulcimina, thanks for your comments. Yes, I've seen the Mary Newport story. Both she and the couple who used to work in the Pentagon/White house who have a YouTube video series up have been inspiring. CW just says Alzheimer's is a one-way ticket and incurable. To see 2 examples of what appears to be complete recovery is wonderful. In both cases though, it's a husband/wife team and I believe that there's a lot more allowance for a spouse to dictate terms than a child. Huh, that sounds a bit strange, but when you take marriage vows you're agreeing to work together. In the course of their 57 years of marriage, my mother ran the finances and also the way things worked. In the end it was her choices on food (CW unfortunately) that ruled. But I believe that my father was okay with that because that was what he 'signed up for'.

    From what I can see, the success of Dr Newport and the ... goes to look it up ... ah, the Scoggins (found via Jimmy Moore's Living La Vida Low Carb blog) , was as much down to the low carb protocol as the supplements they both used. From what I've read about recent Alzheimer's research there's a lot of talk about type 3 diabetes and insulin resistance of the brain which would explain why the low carb works in reducing inflammation. If Dr Davis is right in his understanding of CHD, that the inflammation from metabolic syndrome and/or specific reactions to wheat proteins is what causes the accumulation of cholesterol at the site and eventually the formation of atherosclerotic plaques, then it's possible a similar mechanism may be at work in the plaques and tangles of Alzheimer's disease. Which might explain why cutting out wheat and all grains had such an effect on my father's cognitive ability.

    Only ... going low carb is hard enough for some people when they understand what they're doing and why as both Mr Scoggins and Dr Newport's husband appeared to. They both seemed to have insight into their condition and agreed to the diet their wives suggested. Initially, at least, my father didn't have any insight, though I believe that is changing. I have to be careful not to push the boundaries of what is in my father's best interests, especially since my brother and I have power of attorney and must not be seen to abuse the power we have.

    So, with insight, I know that my father would be willing to try anything that had a good chance of working. Without it, I feel I can't go beyond what he has already tried or what he doesn't notice or is enjoyable for him.

    Currently we have bacon fried in coconut oil and eggs scrambled with coconut oil for breakfast. I think I can add in a large teaspoonful (perhaps in liquid form) as a supplement just before his lunchtime banana as the banana will take away the texture and he already accepts Vit D3 in oil form. For dinner he has potato slices fried in coconut oil as well as whatever meat I'm cooking, usually fried! So his fat ratio is well up from where it was and his carbs are well down with no wheat products at all - not even beer as I've substituted 'hard' cider!

    Adding it to anything else, well, he used to like mashed potato, but then seemed to prefer fried and wouldn't touch the mashed. I might try it again as you say with the coconut oil, but if he prefers the fried, that's what he gets. I won't put any grains back into his diet as it's a lot easier not to have to explain why he can have this but not that and I'm still trying to lean towards lower carb.

    As for coffee and tea, unfortunately when he took out the dairy to help his arthritic hip, he never put it back so his coffee is plain black and adding coconut oil woud substantially change the taste and texture. He's also never been one for thick soups or drinks like shakes/smoothies, so I'm kind of limited. I'm hopeful that as things progress he will have more insight and be accepting of more radical changes. But thank you for the suggestions.

    We've only been at this for 6 months and both Dr Newport (low carb plus coconut oil) and the Scoggins (low carb plus phosphatidylserine) took 2 or 3 years in the course of their recovery. My father's currently moderate carb, I believe, and taking both coocnut oil incidentally and phosphatidylserine as a supplement, so I'm trying to cover all bases!

    I think my task for the next week is to try tracking his macros to see just how low carb we are and how best to reduce this if possible. I think it will come down to the chocolate intake in the end!
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    You could make your own chocolate with coconutoil. That would make for great way to eat more coconut oil (melt 5 tbs coconut oil, add 7 tbs cocaopowder, add approx. 2 tsp raw honey experiment to best taste. Pour in silicon molds. I usually put different nuts seeds or coconut flakes and somtimes some cinnamon or instant coffee )
    Pieces of fresh coconut are also a nice snack and must contain oil.

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    awok677's Avatar
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    Quote Originally Posted by paleodutch View Post
    You could make your own chocolate with coconutoil. That would make for great way to eat more coconut oil (melt 5 tbs coconut oil, add 7 tbs cocaopowder, add approx. 2 tsp raw honey experiment to best taste. Pour in silicon molds. I usually put different nuts seeds or coconut flakes and somtimes some cinnamon or instant coffee )
    Pieces of fresh coconut are also a nice snack and must contain oil.
    Thanks for this. Yes, I've been experimenting, but while I can follow a recipe or wing it with savoury foods, sweet stuff is a mystery to me. I've tried a mix of various ratios of coconut oil (because yes, if I can use that as a foundation, definitely the best way to get it into him), almond butter and cocoa. But given I've not added any sugar, (just wanted to know if it could be done without) I think I started with too much cocoa (Green and Blacks). Just waiting now for a delivery of cocoa butter which I'm hoping will help sweeten the taste as well. Also I have hazlenut butter to try which I think might be a touch sweeter than the almond butter. I think today will be another experimentation day.

    I have to be careful about adding things to it as he's not able to chew properly and tends to react to 'bits' by spitting them out! I like the idea of instant coffee powder though, for later experimentation. Thanks.

    I'm hoping that eventually we'll get to a stage where he won't react to an unexpected texture by spitting it out. At the moment on a good day he understands how to deal with chewing bacon with only opposing incisors, on a bad day it gets chewed into a tangled mass and put back on the plate. I don't think he'd deal with fresh coconut as it really need molars, but I might try him on a piece just to see.
    Last edited by awok677; 05-10-2013 at 04:14 AM.
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    Okay, so I've worked out a spreadsheet to track his ratios roughly (I already have a spreadsheet for myself), which I'm hoping will let me see how we might lean towards lowering carbs and increasing fats without making massive changes. Yesterday (1st Day) his total was about 1450 calories with 52% from fats, 12% from protein, 34% from carbs and 2% from alcohol! A quick additional column tells me that 20% of those calories came from commercial chocolate as well - definitely not ideal. On the other hand, the fact that we are seeing improvements even with these figures is encouraging.

    I wasn't sure about the total calories though as it seemed low (at 1300) but I've added up extra coconut oil from cooking as an approximation and 1450 seems better for an inactive 93 yr old. He's not carrying any extra weight but he also doesn't seem to be losing any. He used to be 5' 8", but now he's probably more like 5'4" standing straight and I have no idea of his body weight. I'm more concerned that in fact he only got 42g of protein. Protein of course comes with the inherent problem of chewing and it's impossible to predict how he'll take any given source on any given day.

    In any case, one day isn't much to go on, so we'll see what kind of data we can build up in the next couple of weeks. I'm feeling quite pleased that I've got a way of getting a rough idea of what he's eating and where it's coming from. The data collection aspect is quite addictive.
    Last edited by awok677; 05-10-2013 at 05:17 AM.
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    I also use cocaobutter, it makesthe chocolate more solid and better to keep outside of the fridge. I use 3-4 tbs cocao butter and 2-1 tbs coconut oil. More coconut oil makes it softer and easier to eat for your father. In stead of cocoa butter and honey I sometimes use a couple of squares of 72% or higher percentage chocolate for better consistency and some sweatness.

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